Mad studies seeks to counterbalance the professional discipline of psychiatry with people’s experience of madness. Photograph: Garo/Phanie/Rex

If the American Psychiatrist Association’s diagnostic and statistical manual of mental disorders (DSM-5) is the global bible of psychiatry, with its ever-growing list of psychiatric categories, then Mad Matters, bringing together academic and experiential knowledge on mental distress in Canada, is the guiding text of mad studies.

Mad studies has been pioneered by Ryerson and York Universities in Toronto, with key figures such as mental health survivors, activists and educators David Reville and Geoffrey Reaume and academics Kathryn Church and Brenda le Francois. They challenged the way that psychiatry was shaping their lives and challenged the discrimination that went with being considered mentally ill.

“What we’re trying to do is offer a counterpoint to the history of psychiatry, which is sort of a professional and a disciplinary history, with the lived experience of madness,” says Church. Building on their own mad history and mad studies courses, which centred on service users’ experience, they held an international conference in 2012.

Church argues that it is time that people trained to work in mental health aren’t just steeped in formal knowledge, but in the knowledge of the personal narratives of people who have been through the system. She also says that higher education should be made more accommodating to those who have experience of mental illness and its shaming labels. However, the big breakthrough was the publication last year of Mad Matters. Mad studies is now being picked up worldwide and has arrived in the UK with the first ever programme at the International Disability Studies conference at Lancaster University earlier this year.

Such fresh thinking is needed more than ever in the UK. “Recovery” was meant to be the bright new idea of mental health policy. For many service users, however, it has become code for cutting support and trying to push people off benefits and into employment. The rhetoric of “user involvement” carries less conviction as the sector is reshaped more by a push to privatisation than by the appeal for parity of esteem with physical health policy.

Perhaps most important, the over-reliance on drug treatment and the reduction of “talking therapies” to short-term cognitive behavioural therapy, offers minimal hope for the future. The big traditional mental health charities are hardly an effective voice to challenge the failings of current policy, as they are closely tied into government by service provider contracts.Madness and distress are not “an illness like any other”. No other illness is associated with the same stigma, isolation and low policy priority. The approach embodied in mad studies offers us a coherent roadmap for rethinking our mental wellbeing by recognising people who have experience of mental distress as both service users and experts.